2021 brings new opportunities to learn even more about PWS and improve the health of those living with PWS. De-identified data from the Global PWS Registry is actively being used to help PWS physicians understand medical problems in PWS, provide scientists at the FDA with a better understanding of the needs of the PWS community, and accelerate clinical trials.
The Global PWS Registry is one of the community’s most effective tools to inform research and clinical care. There are currently over 2000 families from around the world enrolled in the Registry and our knowledge grows with every survey completed! Up to date entries from each participant are critical to the strength of this powerful community tool! By updating your current surveys and/or completing new surveys, you ensure that the most current information is available to researchers and shared back to the PWS community. Go to www.PWSRegistry.org to get started today!
Update your surveys TODAY and be entered to win a $50 Amazon eGift card!
For every 5 surveys updated or new surveys completed in the Global PWS Registry from the list below you will be automatically entered into a drawing for 1 of 10 $50 Amazon eGift cards.
- Gastrointestinal History
- Dental History
- Orthopedic History
- Endocrinological History
- Pulmonary History
- Hippo, Psycho and Behavioral Therapies
- Speech, Occupational and Physical Therapies
- Psychological and Mental Health
- Sleep History
- Contact Information
- Behavior
- Diagnosis – Please upload Genetic report if available
- Sociodemographic and Socioeconomic
- Developmental Milestones
- Sexual and Reproductive History
- Neurologic History
- Education and Employment
- Well Being
- Research Trials
- Participant Demographics
If you update/complete ALL 20 surveys listed above, you will receive 5 BONUS ENTRIES into the drawing for a gift card. Surveys must be updated/completed by January 31, 2021 to be eligible for the drawing for 1 of 10 $50 Amazon eGift cards. Drawing to be held on February 15, 2021. Winners will be notified via email.
To begin, go to www.PWSRegistry.org and click on the ‘Updatable’ tab to update your surveys. To complete NEW surveys, click the ‘Initial Surveys’ tab to see a list of all available surveys not yet completed.
If you are creating an account in the Global PWS Registry for the first time and have questions or have questions about your existing account, please email info@pwsregistry.org OR info@PATHforPWS.com for help. You can also call (760)420-5878 to speak with an FPWR team member.
